Better late than Hairy

Now, don’t get me wrong. There are, overall, good things about my hematologist. This blahg however is about her faults, which I’ve been counting. Wanna count with me?

1. She is late. I’m not talking about her personal life. I don’t know about that. I’m talking about her showing up. Her daily appointments begin at 10am, and she saunters in around 10:30am. If I have a 10am appointment, I now show up at 10: 30 on the off chance I’ll get to open the door for her so she won’t have to break her saunt. I bring a book and sit. I mean, what can I do, not go to the doctor?

2. She is not always up to date on my medical history. When she became my doctor we spent a meaningful two appointments together before she went on a two-week vacation. During this time I was hospitalized for a week. After she returned we reunited, and a few appointments later she looked up from my medical history chart and said “You didn’t tell me you had been hospitalized”. I wonder if her surgery patients opt for local anesthetic so they can say “I did tell you it was my left kidney that hurts, didn’t I?”

3. The woman talks too fast. Damn it, even Indy 500 drivers show more speed restraint. She rattles and prattles and is one of those people (and I don’t know why this is) that when you ask them to slow down they don’t know how. She just looks at me as if to say, “You are interrupting me.” As this is mostly new vocabulary for me I grasp about 80% of our conversation, which is unnerving. Sometimes when asked to explain what she said I feel like I’m doing Who’s on First:
“I don’t even know what I’m talking about!!”

4. And the Winner is!
My beloved doctor did my second biopsy. The results showed I need more treatment. My family and I spent an anxious week wondering if we should leave Argentina early and get treatment in the U.S., putting everything topsy-turvy. Yesterday she mentioned that- oops! - perhaps she did the second biopsy too early, maybe I only have residual leukemia which is slowly dying, in which case I am Leukemia free, as a later biopsy would have clearly shown. (There is BIG difference between being Leukemia free and rushing a family of 5 to another hemisphere so I can continue treatment). Too early? Does that happen a lot? Does it happen in other professions?

Mother “My child ate a Cad bury egg this morning”
Dentist “Well, we’d better pull out that molar. I’d hate to wait too long.”

Customer “But I bought these tires new last Thursday.”
Mechanic “Looks like you got here just in time”

President “I think a pre-emptive strike is called for.”
General “Sir, the ambassador only said he didn’t like the soup.”


Now, I would enjoy being leukemia free. But I’d like to hear about it like this:

We waited like we should have, and you are all clear Mr. Butler. Congratulations on being in remission!

Rather than:
Oops! Maybe you are out of the woods. Could you please leave my office, it’s not 10:·30 yet. (Of which I would pick up something about a mistake happening in the woods around 10:30…or some such 80% combination)

I might devote a blahg to my doctor’s good points. They do exist, and if I can find enough of them to fill up a post-it note I’ll go ahead with the project. I’d hate to wait too long.

To-marrow

Though I’ve never been trampled by zebras nor fallen from a hot air balloon, I know pain, specifically bone marrow biopsy pain. I won’t compare it to giving birth or breaking a bone. Those I haven’t done. I compare it to my previous biopsies and conclude, yes, they are still painful.

During a previous sonogram I was on my back, looking at everything. For the biopsy I’m on my belly and told to look towards the wall, away from everything. Anesthesia is injected into the hipbone and they tell me to breathe deeply and think pleasant thoughts. I hold tightly to the sides of the bed. Anesthesia is not going take away all the pain I will feel. The needle like tube sucks up air as they practice for the real thing.

They insert the tube and I thank God for my kids. Due to them we took Lamaze classes and learned about my “special place”. Actually, it was my wife’s “special place” but three kids is enough and now, lying on the table, I’ll take that second star on the right straight on till morning and discover mine. Pain taken as a whole pie is not easily bearable, so we divide it into portions. Breathing deeply and thinking about something else accomplishes this and leads one to their special place. Theoretically the easiest way to learn about a special place is to ask a woman during labor “Have you found your special place?” “What is it like?” However, during labor my wife told me to “shut up”, putting me in the catch-22 position of knowing nothing about this oasis but making me want to scurry from the room to find it. Sometimes theory is best left on paper.

I’m working with all I’ve got to portion that pie into manageable pieces. I don’t care if those who fall out of hot air balloons do so without anesthesia; at this point what I’m going through is comparable. In the past I’ve connected with my insides. At times my stomach’s gurgled “Here is what you sent me, do with it as you please.” My heart has gasped, “What gave you the idea you’re in shape?” But feeling my bone marrow jostled as the needle works a bit loose is surreal and painful. Marrow should be left alone. A perfect world would have no leukemia and marrow would neither be shaken nor stirred.

My special place is with my son. Earlier that morning our four year old banged his plastic bat on the bed and pillows, enjoying himself until I took it away and left him downcast. Now I picture myself back in the bedroom while he hits the bed with all his strength. He glows with his wide smile, happy eyes and mussed up blond hair. He jumps around the room and nothing stops him until the doctor announces she is finished. I come back to the room as the tube is pulled out and I lie there, my hands shaking a bit. There is a lot to be said for special places.

Hairy Cell Leukemia looms large in our lives; it seems anti-climatic that the miniscule marrow in front of me holds the answer. Sitting, somewhat dizzy and not wanting to walk, I hope for healthy marrow.

It’s small, but boy does it hurt coming out.

Tit(s) for Tat

I saw a woman today who makes “nip and tuck” an anemic understatement. She was….well….she’ll never drown. She couldn’t. Noah’s Ark didn’t have her buoyancy. I was at Fundaleu, the leukemia hospital in Buenos Aires. Miss “hey, look at these!” was on one of the insipid Argentine talk shows that grime the airwaves. Half the time the on-air personalities are poorly miked so I don’t understand them; half the time I wish they were not miked since I understand them. It’s just no-win.
Our lady of blessed abundance talked about….wait…did she talk about something? Perhaps she was poorly miked. Yea, that’s it. Anyway, she went on about herself and the important things that required her to fill (yes, fill) the screen. She was so blonde, so obviously enhanced and so forcibly beautiful that I was sickened that she would model what is attractive. Hers was a narcissistic life centering on shallow goals and skin-deep talent. Is this really to what we aspire?
The contrast between her and what went on around me was drastic. Across from me a 10-year-old needed help walking from his seat to the doctor’s office. Near him was a 50ish lady whose goal was to have a good day. She and the boy had the same amount of hair-none. An old, stooped-over man shuffles by, wanting more years. Another lady, maybe late 30s with no hair sits and waits her turn. All of us want life. We want it back. We want to be victors. Certainly that is real. That is substantive. When we are healed, if we are healed, doesn’t that mean, doesn’t it require, that we lead lives of significance?
We at Fundaleu look up at the screen to the stars on TV, but they will never come down and look at us. We don’t fit into their picture, into their glamorous, buxom world. But we have richness; we know suffering. It makes us stronger.The doctor said my counts have stayed stable for three weeks. Next week she plans a biopsy to see if my marrow is bald. I hope it is. I hope all of us leave Fundaleu and live. I hope we turn off the boob tube and live differently. There are already enough Barbies out there. We don’t need a Summer Sun and Surgery doll modeling our future

Hairy Goes Hiking

I just received one of the most meaningful e-mails ever…and even if you don’t count Spam and all those e-mails from some Nigerian woman whose rich husband died requiring her to find a trustworthy US bank account to deposit her money in…I’ve still received quite a few in my day (which, I might add, is not yet over).

I met Jenny last year while visiting the United States, and though I don’t remember the encounter, she wrote saying she hiked the Grand Canyon a few months back. Why? As a member of the Leukemia and Lymphoma Society, she hiked to raise awareness and money in honor of her grandfather, a member of the hcl club. She passed my name to her coaching mentor, and this year a group of hikers will hike in honor of a group of hcl patients, my name being among them. I don’t think I have ever been so honored. Sure, I won Best Bandsman in 11th grade, a couple of state awards for some awesome tuba playing, I was ALMOST classman of the year at college and won an honorable mention (read: t-shirt 2 sizes too small!) from C-Span for an article on Gerald Ford (yes, that Gerald Ford), but this goes above and beyond.

Seriously, I’ve never been so honored and so humbled. A group I’ve never met is taking leukemia seriously enough to “hike a difference”. If Argentina were closer to the Grand Canyon, I’d give them all hugs.
Jennifer’s grandfather, who eventually died of cancer, went into full remission from hcl. With groups like this working to make a difference, I know that other leukemia and lymphoma victims will benefit as well.

Magic Moment

I had a magic moment in the bathroom.

No, not my bathroom. My bathroom has a toilet that continually leaks, two bathtub knobs that don’t work right, and somewhere, ah somewhere, there is a leak into the neighbor’s home. The neighbors keep telling me about it, and, of course I smile and respond that I’ve told the house owner about it, plus two architects and three plumbers. I’d be happy to tell the guy who sells newspapers around the corner if they would cheer them up.

But back to my bathroom moment.

Oh…. only I use my bathroom. As I am still dealing with the “L” word, all household butts have to use other household bathrooms. My bathroom is mine, all mine.

The bathroom in question is located in the local movie theater. It is not mine all mine, but is more of a “whosoever” bathroom. Yesterday I took my kids to see Charlotte’s Web. Before we left I gave them something to eat and we went to our respective bathrooms, only to hear “I’m hungry!” and “ I gotta go pee!” as the opening credits arose. Well, I held out as long as I could, but somewhere between “pig” and “humble” I took Andrés, my four year old tiger, to the bathroom. He chose a stall, and chose well for someone who is new to the game, while I went on autopilot and automatically chose a good stall using all the prerequisites that I learned and mastered years ago. After, we washed our hands and then….and here comes the magic moment, I taught him to use the electric hand dryer. I pushed the on button, and held his hands under it. He stood there while I rubbed his hands together, not really getting it. I went over to the other electric hand dryer, turned it on, and began rubbing my hands together. He looked at my hands and then repeated what he saw, doing an A+ job. This went on for a few seconds, and then he looked up at me and a huge grin spread across his face. It was a magic moment, and he looked absolutely “radiant”.

Hairy Guilt

Sometimes I don’t feel worthy to have leukemia….

I have what might be called a “good” leukemia, which sounds rather oxymoronic if you are the one with it. However, my leukemia responds very well to one round of chemo, 7 days of shots, 28 in all. Then of course I have my neutopenic fevers, caused by low white cell counts and unchained bacteria. But….. when all is said and done, if the chemo has done its job my travails through the valley of Hairy Cells lasts about five months. I go weekly for medical checkups to check my counts, but now as an outpatient who comes and goes and doesn’t eat raw fruit and vegetables, takes a daily shot at home, and swims again. Life returns to normalcy pretty quickly if fevers are kept at bay.
Meanwhile Miguel, my hospital room mate, continues to suffer from lymphoma, will be in the hospital at least a month, is going through a marrow transplant that has left him shaking, coughing and practically bedridden. Some of the patients I began with I still see, without hair, using canes, gaunt and receiving debilitating chemo. One child sits in the waiting room, no hair and with a face mask, while his parents sit next to him and hug him. Marcelo is struggling with his second round of lymphoma, has a wife and young child, and is hoping that a transplant will give him years to watch her grow. One man, what was his name? also struggles with something….what was it? and hopes to watch his children grow.
I feel like a man with a nasty hand burn who needed to go to the hospital burn ward. I took my place among all the burn victims, and the doctors labored to save my hand and help me on the road to recovery. And when I left the ward I left all those who could not heal easily; the disfigured who are condemned and relegated to center their lives around THE CLINIC, while my life I basically label as my own once again.

I have entered a door into a world of great pain and uncertainty, a world controlled by a cruel disease that kills little children as well as leaves widows and widowers to mourn. I entered a world where the future is always in question, where no one is “cured” and where future pains bring out the trembling question, spoken quietly, …. “Has it returned?” This new world is a waiting room where we all sit, and know, although we don’t say it, that some will no longer sit because they will be dead, and others will take there place.

But I, I have a “good” luekemia, and for that I only stand in the doorway of this world, fully expecting to leave it, hopefully for good. And, if I do return again, for a third time, it will most likely be to stand again in the doorway and befriend those who can’t leave so easily, some who won’t leave at all.

phlegm

I am afraid of green phlegm.

Green phlegm ranks right before ingrown leg hairs in terms of fear. But now things are different. I stood looking at my green phlegm in the kitchen waste basket. I spit unceremoniously, then returned for a peak. Until now when I´ve noticed my phlegm I’d follow up with thoughts such as “I wonder if we have any speghetti left”, or “maybe I should call them back”, or “why am I looking at my phlegm?” But green phlegm means a virus, and that is what I don’t want.

I finished chemo and celebrated by spending a week in the hospital. Chemo, which kicks butt and takes names, quickly finds it has no names to take as it successfully kills the evil leukemic cells along with many of the fine, healthy cells who were probably thinking “What the hell did I do?” before they expired. Due to this, a neutropenic fever arises, which is compounded by the body’s bacteria. Now, the body has bacteria, germs, and all sorts of other nasty things. I don’t know what they are, but I guess that the body has more than just bacteria and germs and “all sorts of other nasty things” covers me without requiring further study. Those bacteria, germs, et. al, when the body’s defenses are low, become like the cow who looks up surprised from the field one day saying “Grass…I’ve been eating grass!”. The bacteria, seeing the healthy white cells gone, or worse, lying dead at their post with a “What the hell did I do” look on their faces, realize just how oppressed they were and begin colonizing, growing subdivisions with dirty streets, poorly designed sewage systems, and unattended parks. It is not long before the body begins to be overwhelmed by “bacto-sprawl” and shows its discomfort with a fever.

That is my story. I had growing bacteria colonies in me, ones where the trash was never picked up, where the schools never opened, where expired goods were not removed from the store shelves. I battled with them bravely from a hospital bed while I read, looked at the ceiling, and watched that early 80s group ABC reunite on VH1’s Bands Reunited (They didn’t sound bad). Now I’m home again, with family. I take a pile of antibiotics every day, a shot to bring in white cell reinforcements who will check shelves and ticket speeders, and I don’t want to go back into the hospital. Green phlegm is scary.

McChemo

I go down daily, for a seven-day period, to get injections of 2CDA, the drug of choice for the Hairy Cell Club. I am more tired, but not yet fatigued. Yesterday I took my second daughter with me, and today I took the oldest (ages 7 and 8 respectively). Afterwards we made the obligatory pilgrimage to McDonalds, and then walked around Recoleta, Argentina’s most famous cemetery which is full of mausoleums. I hear more English there than anywhere else in Buenos Aires, as it is a popular tour bus stop. There you can see the graves of numerous famous Argentines, including (drum roll) that of Eva Perón, the country’s most famous woman. And…Argentines are still irked that Madonna would dare play Eva in a film. If you are ever in Buenos Aires, stop and see the Recoleta cemetery and then go to the Hard Rock café, or another restaurant, nearby. There is also a beautiful catholic church next door with a cloisters museum. You might not be into historical museums, but this one offers a great view of the cemetery, making for some great pictures.

My strength remains pretty good. Yesterday was a full day and I did not sleep a lot last night, so really slept hard this afternoon. We commented today that the onset of my leukemia also saw: 1. Our phone system breakdown and remain out of commission for a week. 2. The death of our VCR player. 3. Head lice spread abundantly throughout the scalps of our girls, 4. The pool began to drain…on its own, and 5. Our four-year-old son has a fever.

When it rains….

down to fundaleu

Falling off the wagon requires you to get up again. And when I got up and dusted myself off, I saw that things were different. Gone was the beautiful scenery of western New England, and gone was my wife’s rather large stomach. She gave birth to Elizabeth nine years ago, who ended up having her own complications, and we followed that with Emily and later Andrés. I looked around and saw the bit overwhelming city of Buenos Aires, Argentina, land of beef and Nazis, where we had been living for 6 years. Before that we were in Costa Rica. My children rattled the day away in Spanish. I mention that since we decided to get treatment here in Argentina, requiring me to visit hematologists and, although I have a pretty good command of Spanish, learn a whole new vocabulary and sound like a child the many times I didn’t know the word I wanted, or couldn’t grasp the word they wanted me to know. Ah….language learning.
Unlike the United States, oncology and hematology here are not interconnected fields, so my four hour wait for the oncologist at a nearby hospital proved to be somewhat in vain but fortuitous in that she did not recommend the hematologist at the hospital, nor could she recommend any in the area, but rather sent me to fundaleu (http://www.fundaleu.org/), a well respected leukemia hospital in the touristy heart of Buenos Aires. It was at fundaleu that I had my first flashback to my sojourn of nine years before. In the waiting room there were the same types of people, those with little hair, wasting away due to chemo, the worried expressions of family members, a TV set high above us all, and those, like me, who came and went, got to know the workers on a first name basis, and remembered to bring something to read. At the risk of being trite, it was said that Hitler at least made the trains run on time. Could we find a non-Nazi German around here, the area where I live is full of them, who could show some of those same efficiency skills and keep appointments running somewhat on schedule?

vip club

Nine years ago my wife was pregnant with our first child and we were living in beautiful western Mass. Around her 8th month, or a bit before I became weaker. At first it was more difficult to walk up stairs without getting winded, later it was even more difficult. In September of that year I walked 60 blocks in New York City, in December I returned with my wife to watch the Nutcracker and found it hard to walk six blocks. Finally I went to a doctor and had a blood test. A quick call from the hospital reported that I was only operating on 40% of my blood supply. I had leukemia. I had a very rare leukemia called Hairy Cell Leukemia, which affects around 700 US citizens a year. Due to modern medicine, which has evolved to allow the patient more than a spleen removal, interferon treatments and two more years of life, today’s lucky card carrying Hairy Club member receives a week of Cladribine and usually the good news that the hairy cells have gone bald, that one is in remission, and that one is, “cured” from a disease that has no set cause. My possible link is that I spent my formative years on a farm. Could it be the pesticides used affected me while I ran through the fields ripping off corn ears and chucking them at Robbie and Dave? I don’t know
Cladrine does wonders. It causes no hair loss, I did not waste away, and it lasted for one week. I was declared to be in full remission, along with the other 80% of those Hairy Cell Club members who don’t get the Hairy Cell variant, which is more difficult to eradicate, or the Japanese variant, which I happen to know nothing about. However, my hairy cell days weren’t behind me. Along with the 80% of us who go into full remission, I found out recently I now belong to an even more exclusive group, those 40% who fall off the wagon and go out of remission.